What do I do now?

[JoeR]

At last, I am off pramipexole, I was on 5 x 0.088 mg tabs a day. It took a long time but I have been pramipexole-free for two weeks. I am still on oxycodone 20mg twice a day. Do I stay on the Oxycodone or do I stop taking it, I was put on Oxycodone in January 2023 to help me come off pramipexole which I have now done. Before being put on Oxycodone I have been on lots of other tablets but none worked that's why I was put on opioids. My wife and I watched the TV series "DOPESICK", which frightened us both. If I come off oxycodone what do I replace it with? My wife thinks I won't need anything but she hasn't got RLS. OR do I stay on oxycodone 20mg twice a day? Everyone thinking of taking Oxycodone should watch the TV series called "Dopesick". Please see the series.

[SueJohnson]

Congratulations on coming off pramipexole. I know it wasn't easy. You can stay on the oxycodone. After a couple of months you might want to try reducing it a little as the usual effective dose is 10 to 30 mg. You might also find that taking it only twice a day even though it is the extended version might result in mini withdrawals as it doesn't really last for 12 hours although they say it does.

[JoeR in reply to SueJohnson]

Thanks for the help and advice as always.

[SueJohnson]

And don't let the TV series worry you as at the low dose used for RLS you won't get addicted.

[Madlegs1]

I don't know the Dopesick show, but it sounds like it is part of an hysterical anti opioid movement that seems to be current in the USA at present.

This is not based on scientific reality.

As long as one is not of an addictive personality, then low dose opioids are being proved to not be harmful.

I have been on Oxycontin 10mg twice a day, plus 5mg of Oxynorm (to make up the shortfall)

That is 25 mg of opioid per day-- and it covers virtually all RLS symptoms.

Except when I get triggered-- usually msg, and definitely alcohol.

Msg is a real nasty, as it gets hidden in foods and disguised as enhancers etc.

As Sue says- it would be worth trying to get down a little bit to a lower dose-- you could use the 5mg dose , or utilise the Oxynorm 5mg.

A lot will depend on your body's cycling of the med and how long you can make it last.

Oddly, I only get about 9 hours out of the Oxycontin, but can push the Oxynorm to 7hours. (It is meant to only last 6 hours?)

So-- it's a question of experimenting.

Keep an eye on triggers, and also you will be suffering the aftereffects of withdrawals for quite a while.

Good luck.

[Joolsg]

Dopesick relates to Oxy use for pain. Using opioids for pain leads to tolerance and patients have to increase the dose to achieve previous cover and that can lead to addiction.However, when opioids are prescribed for RLS it does not usually cause addiction/tolerance unless there's a history of abuse. Dr Winkelman's Massachussetts Opioid study confirms this.

The one point that DID come out of Dopesick is that Oxycontin does NOT last 12 hours for many patients. That's what fuelled the need to increase the dose.

Many patients with RLS do very well on Oxycontin taken every 12 hours. But many find it runs out after 4 hours and RLS breaks through.

In your case, after Pramipexole withdrawal,.it can take several weeks/months for dopamine withdrawals to settle.

RLS doesn't usually disappear. Unless you respond to iron therapy you will probably need meds for life.

Oxycontin works well for many. If you get breakthrough RLS, you can ask for 5mg pills and take every 4 to 6 hours.

And bear in mind that if you switch from Oxycontin you will get opioid withdrawals, the main symptom of which is RLS.

Here's the Massachussetts study.

Targinact, which is Oxycontin with Naloxone, is licensed in UK for RLS.

massgeneral.org/rls-registry

[TheDoDahMan]

I'm in agreement with all the previous advice. Your task now is to find out the least amount of Oxycodone which will continue to mask RLS symptoms. So continue your current regime for another month or so to make sure the pramipexole is completely out of your system. Then decrease the Oxycodone by 5 mg every 2 weeks until you find that your RLS symptoms are no longer being masked - then bump the dosage back up to where it was previously effective. Good luck.

[Delilah162]

Hi, I’ve just been put on ocycodone.l like you was on 5 0.88mg of pramipexole I took my last one on the 31st of August and it been hellish. I started on 5 mg at night and it did nothing I’m now in 10 mg which is doing something. When I took my prescription to boots yhe pharmacist said have you seen Dopesick your going to get addicted to these! I said it’s highly unlikely (I’d read stuff I’d seen Sue and Jools recommend) but I said I’d rather have to take this tablet for life than have no life. I’m waiting to hear about an iron infusion.

Good luck 😉